Liam was born healthy after a calm home birth, but at 11 years old his rapid breathing lead to an ER visit for evaluation.
It felt weird leaving. I couldn’t shake the feeling something was terribly wrong, but I tried to trust the doctors knew what to look for. It must be okay.
On Liam’s 14th day of life, we went to see Jolene. The second she saw him; she said something was wrong. She was most nervous about a blood infection, so she drew blood herself and sent it off to the lab. She also listened to his heart for minutes. Jolene said there was no murmur, but sometimes it sounded like there might be a periodic one. She asked me to get him into his pediatrician as soon as possible. I called as we left her office and made an appointment for the next morning.
At 15 years old Liam’s breathing worsened, revealing a life-threatening coarctation of the aorta, requiring immediate intubation and airlift to a CICU.
As I walked up, everyone fell away, and I had a doctor approach me. He told me we had brought Liam in just in time. Any longer, even an hour, he probably wouldn’t have made it. He said Liam was still incredibly unstable, and they needed to get different meds to his heart. They needed to place a central line, and I couldn’t be there when they did. So, I said goodbye again and went to the waiting area.
Thomas arrived right before we went back to be with Liam again. At this point, a new doctor came and told us that since adding more medication, Liam had stabilized and was doing okay. He told us repeatedly Liam was critical, and we had only just made it in time. That first night in the hospital, we barely slept.
Liam would move around and cry, but because of the tube down his throat, he couldn’t make a noise. It was heartbreaking, trying to comfort my tiny baby, but unable to pick him up, or hold him close. We could see how scared he was, and there was nothing we could do.
The next day, Liam was stable. They spent the day running labs to make sure he was strong enough for surgery. They did an ultrasound on his brain to make sure there were no bleeds, and they checked his kidneys and liver. Both came back with not perfect labs, but good enough and it was clear they were improving with the medication.
The best-case scenario with the medication was it would reopen his PDA valve, but they did two echocardiograms, and both showed his PDA valve was not open, but his coarctation had somehow released a bit and was allowing real blood flow to the rest of his body.
Once all those results came back, we were introduced to Liam’s surgeon, Dr. Mitchell. He was so kind and helped us understand exactly what was going on with Liam’s heart and drew out and explained how he was going to fix it. He ordered 3D images to help figure out the best course for surgery and showed us exactly where he would cut out the coarctation.
He set the surgery for the 16th of August, a Sunday. And the countdown began. We were able to hold Liam just once before surgery. It took two nurses to get him into my arms, and he cried silently the whole time they were moving him, but the second he was in my arms, he calmed down. He fell asleep and seemed to rest for the first time in days. I held him for at least an hour, wishing I didn’t have to let him go again. I finally asked for them to put him back, and we spent that night praying everything would go well the next day.
The morning of August 16, they took Liam to surgery. They believed it would take at least 4 hours and could take as long as 12 hours. We walked to IHOP to meet my parents and wait. It felt weird being out of the hospital, I hadn’t left since the day I first got there. We talked about nothing for 2 hours. They had said they would try to update us hourly, but because it was the weekend, they might be too short-staffed to have someone get away and call us. They finally called right around the third hour and told us Liam was out of surgery! It was recording time, and they said we could be with him in about an hour.
Liam recovered remarkably after surgery, facing brief challenges with breathing and eating, and is now a thriving, happy six-month-old under ongoing cardiology care.
